Getting EM diagnosed in UK (Norwich)

Just to say after consulting , testing and battling with every specialism going and after 8 months of relentless hell I have finally just been diagnosed by wonderful consultant pain specialist in Norwich at the Bowthorpe community hospital . Now due to start IV lidocaine .

Stay strong everyone. Keep fighting, take photos with you , research on symptoms, keep a pain diary etc........ I didnt believe i would ever get diagnosed. I was cracking up. EM has disabled me. my whole body is affected with continuous flares and widespread pain -Im now bedridden with it.

I was the 3rd patient ever seen with EM by this consultant , but he listened to me and definitely knows his stuff. Thank you so much Cathy(specialist nurse) and Dr H.

May I ask if you know of any, doctors diagnosing EM in Hampshire county?

Hi Jed,

Yes The Royal Free in London.It is Prof Denton’s clinic but I actually saw Dr Voon.I was there last week and found them to be very professional.Good Luck :slight_smile:

Oh, okay very pleased thank you. :)

Hi there.

You are not alone. Reading your post, reasearching the illness as good as I was able to, I came to the conclusion that, probably due to the rareness and broadspectre symptoms, doctors have a hard time diagnosing it. For over a year I was by my house doctor treated for depression (another word would be psychosomatic condition or imagination), until finally my heavily and chronically swollen feet with purple, almost dead toes could no longer be ignored and I was referred to a Hospital, where I consequentely had the pleasure to see and visit pretty much every single department, only to hear that every test came up negative or inconclusive.

Here are a few ironclad and well tested/researched facts - kind of frame conditiions you and I may have to live within.

1. EM as primary condition has no cure. If you are older however, havie it on both sides (feet/face/hands), chances are you have it as a secondary condition, meaning, if they can find the underlying systemic problem (from Autoimmune to Siogren to Tumor to etc.etc. - good luck with that, as there are a thousand possible root causes), and this can be adressed or even healed, then chances are that EM may disappear too.

2. Since this thing is considered as a neuro-vascular disease, any heavy thermoshocking will prove to be contra-productive. It therefore makes masochistic sense to avoid by all means ice or ice water to cool down the extremities, even though it is so incredibly nice and painkilling.

3. There is at present no medication addressing the unknown root cause of EM. All the experiences I have read about (here too) are subjective, likely placebo based, and masque at best the cause, while addressing the symptoms barely.

This is, what I came up with so far in order to manage the illness and somewhat arrest further degeneration - by no means a general recipe - as I do not want to disguise symptoms and assist the doctors to one day find the underlying problem..

I try to eat a lot of natural diurethica , such as onions, which may help to get some of the fluid out. I also take cold baths (only a few minutes and full body, not just feet) and then allow some wind chill by means of a fan directed at my bed. My one most affected toe becomes my control instrument. If it gets purple, numb or I loose feeling due to pressure, I immediately lay down flat and/or stop all cooling. No alcohol so ever. one Aspirin in the morning.Vitamin D in medical dosage, due to lack of sun.

This is, how I manage the illness, while one by one possible underlying root causes get eliminated or until one day the primary condition actually becomes clear (for instance a tumor, which literally can be anywhere...). I had for sure my head MRI done, so at least I know I will not be a vegetable anytime soon....

What I am trying to say is that most people here over the age of 40 likely suffer from EM as a secondary condition. The only chance - the only chance - is for the doctors to find the primary cause and heal it. Bad odds indeed, and even worse, if one considers the fact that the EM may not even go away for sure.....

The trick is to have a doctor who isn't burned out yet and engaged enough to refer you to one specialist after another in order to exclude one primariy potential after another. Since there is also the possibility that the primary cause may one day become fully apparent ( eg a tumor) I came to my own individual conclusion and decision to try not to make it any harder on them by trying any kind of medication ( up to and l^not limited to self-medication), hence masking symptoms or even develop side effect symptoms or resistencies or tolerances.....

But that 's just me - just know that so many others seem to suffer like you do. See the glass half full - you live seemingly in the UK - cool weather, much rain, little sun, and the HHS. I am an American stranded in Europe and decided the same. My country does not do shit for me, while my country of birth is picking up the cost. IN other words - it could be so much worse, If I lived in America. This is how you can combat depression. There is always something positive to be grateful for. One has to find it sometimes, but it's there. Focus on that and find something you can look forward to every single day. That's how you survive, until someone finds a cure. It's not much..... but it for sure beats feeling sorry for yourself and drown in the deadly spiral of depression which seemingly is so often accompagnying this disease.

Good Luck.

My dermatologist who diagnosed EM a few months ago is of the opinion that Pericarditis may be the underlying cause. I am almost cured of Pericarditis and I am just wondering - if an underlying disease is cured how long could it take for the EM symptoms to disappear? Are there any guidelines? So far I have not heard from anybody who had EM for a while and then got rid of it because the underlying cause was cured.

Interestingly, my latest information also has something to do with the heart, as so far all specialists haven't found any underlying cause, albeit, concurrently to the outbreak of EM I was diagnosed with heavy Cardiopathy due to untreated longterm high blood pressure. On one of the many EM forums I visited I actually found one single reference to possible connection of EM with high blood pressure and my physician agrees that I may have had EM for some time (minor symptoms only, which only now make sense to me, such as glowing hot red feet (you guys call it flares) and the everpresent need to keep my feet cold) and only, when I developed a serious heart conditioni, it may have triggered the full fledged EM....

Unfortunately, for 2 months now my blood pressure has been in the green area due to heavy medication), albeit my EM has not in the least responded positively. I also have yet to read about a patient who's primary condition had been resolved/healed and who's EM subsequently disappeared.

Well, I hope that does not cause you to resign to the illness, as this is at present the only hope for us with EM as a secondary syndrome. Maybe it wasn't the blood pressure or heart condition after all, maybe it just takes time or more time or a hugely long time. I do believe that honesty and realism is important, since false hopes which end up being crushed, are so much more devastating. On the other hand, I also believe in the power of the spirit, the mind over body, which is why we can never give in to sadness or despair. Medicine has progressed so incredibly much, since I was examined by my father, a great doctor during his time. Why not believe that this will continue to happen, while we wait and hold on to the positive things in life.

Best Regards to you,